Onset associated with Exercise ?

[BurnA]

Also in retrospect I think I had one episode of PEM 3 years before my ME start date. I cycled 1500 km in 17 days with a broken wrist, and on the morning of the last day I had what I now think was a mini-crash, which I pushed through to finish the trip. For the next three years that became my "most tired I've ever been" story, and nothing like it happened again for the next 3 years. So maybe ME has been dormant in my body for many years, but the amount of exertion required to provoke a crash was so high until recently that I didn't notice anything until 5 years ago following a ridiculous amount of exertion, and then 2 years ago much more regularly as the amount of exertion required to make me crash fell into the everyday activities area.

All speculation of course.

This is interesting - I have a similar story. I cycled 700k in 5 days and it took me about a month to recover . Just fatigue though. This was over a year ago and I recovered fully. However my real onset with more symptoms began this year after a particularly tough week on the bike. Now I have full blown ME/CFS.

Often wonder if there was a link to the previous fatigue it not. It could be just cycling that much caused the body to fatigue, and it's totally unrelated. Certainly if this is an immune system disease or autoimmune then its difficult to see how it could lurk around waiting for exertion... But I have no idea

 

[TiredSam]

I cycled and did other sports for about 25 years, and no matter how much I pushed myself or how much I overdid it I always bounced back the next morning. That's why this incident stuck in my mind as being so different. The day before I had cycled all day and was tired in the evening, and expected to recover by the next morning like I always did. The morning after I stood by my bike at the side of the road and just wanted to lie down on the pavement and someone throw a blanket over me. I took it easy for a week or so after the trip and recovered fully. Next crash was 3 years later, not particularly related to sport, more like a bout of flu that stayed for 6 weeks with ME symptoms.

 

[SOC]

Certainly if this is an immune system disease or autoimmune then its difficult to see how it could lurk around waiting for exertion...

It's possible that ME involves an inappropriate cytokine reaction to exertion -- something resembling a cytokine storm.

Cytokine storms can occur in a number of infectious and non-infectious diseases including graft versus host disease (GVHD), acute respiratory distress syndrome (ARDS),sepsis, Ebola, avian influenza, smallpox, and systemic inflammatory response syndrome (SIRS).[4]

It has been suggested the ME most closely resembles SIRS. Clearly we don't have the acute form of these conditions, but there may be similarities in inflammatory process which is triggered by exertion.

 

[md55]

I definitely fall under this category. You can read all about it in a thread I started a few years back asking a similar question.

http://forums.phoenixrising.me/index.php?threads/can-overtraining-syndrome-cause-me-cfs.9075/

To make a long story short, my symptoms started to show up after I decided to join a weekend rec hockey league after many years of inactivity. I pushed myself really hard in the first game and noticed a change in my bowel habits after. Thinking it was nothing, I continued on for another 1.5 months (4 more games). I finally stopped when I noticed my bowel habits weren't improving. At first I didn't really notice fatigue or PEM, all I knew was that any sort of physical activity/exertion would worsen my bowel symptoms. But as time went on, fatigue and PEM started to creep up on me and I've noticed that worsening of my bowel symptoms were linked to fatigue. The more fatigued I am, the worse my D.

 

[Seven7]

@BurnA I have relapse 3 times due to exercise. I was at one point "normal" like a solid 9 to 10. And I started exercising and relapse. I can tell you exactly what exercise I did that cause each relapse.

I have a tell tell when a big crash or relapse is coming so I remember very clear.

 

[Mij]

I think @Hip had an interesting story about one of Dr.Chia's patient (?) who 'recovered' for a few years and then went on a long hike and the illness came back. I can't find his post.

It never really goes away. It's more of a remission.

 

[Hip]

I think @Hip had an interesting story about one of Dr.Chia's patient (?) who 'recovered' for a few years and then went on a long hike and the illness came back. I can't find his post.

Yes, that patient was Dr John Chia's son, Andrew Chia, who went into remission from ME/CFS after interferon therapy for enterovirus-associated ME/CFS. This was during the time when Dr Chia was trialling interferon treatment for his ME/CFS patients.

Andrew was fine, and remained in remission, until he went on a mountain hiking vacation, where the constant day-after-day physical exertion of hiking brought back all his symptoms, and a relapse back into ME/CFS.

I understand that the same exercise-induced relapse occurred in a number of Dr Chia's patients who were in remission as a result of Dr Chia's interferon treatment. After interferon treatment, many of these patients went into full remission from ME/CFS — some for just a few months and others for over a year. All eventually relapsed back into ME/CFS, and Dr Chia noted that the relapse often occurred after a bout of heavy exercise.

What this seems to show is how physical exercise can have a uniquely negative effect on ME/CFS patients.



It is interesting that exercise has been shown to decrease the STAT-1 response in cells, and increase the STAT-3 response. 1 2

STAT-1 is responsible for transmitting the signal from interferon into the cell, and thereby activating the intracellular immune response to fight intracellular pathogens such as viruses. STAT-1 has already been shown to be low in ME/CFS. So as exercise acts to decrease STAT-1, this may further weaken the intracellular immune response, and allow intracellular pathogens to spring back to life.

STAT-3 works in reverse, and puts the brakes on the intracellular immune response. So as exercise increases STAT-3, this again serves to weaken the intracellular immune response, which may allow an intracellular infection to worsen.



Some experiments I did with supplements that up-regulate STAT-1 and down-regulate STAT-3 (in order to boost my intracellular immune response) are detailed in this post.

 

[ukxmrv]

http://www.dailymail.co.uk/health/a...-triggered-severe-allergic-reaction-nuts.html

"Experts say exercising can worsen the symptoms of nut allergies because it causes the gut to become 'leaky'.
This allows the allergens to be passed into the blood faster, and blood to be pumped around the body more quickly."

http://www.dailymail.co.uk/health/article-2289493/Mother-gym-allergic-EXERCISE.html

"She was finally diagnosed with Exercise-Induced Angioedema (EIA), which can be brought on by exercising after eating certain foods, as well as an underactive thyroid that is linked to the condition."

Read more: http://www.dailymail.co.uk/health/a...lergic-EXERCISE-Why-woman-forced-couch-potato.

"Lindsey McManus, from allergy charity Allergy UK explained: 'Exercise-Induced Anaphylaxis is a very rare condition, that can be fatal if you don't know how to manage it properly.
'The reasons for it happening are not really fully understood, but it's thought that the increased heart rate prevents the body from fighting allergies that it would normally be able to cope with."

Read more: http://www.dailymail.co.uk/health/a...ic-EXERCISE-managed-award-winning-gymnast.htm

After Miss Coates has finally been diagnosed with a rare condition which affects her mast cells, which protect against disease and are involved in wound healing.
Doctors believe when she gets hot and sweaty, this causes degranulation of her mast cells, which sends her into anaphylactic shock as her body releases too many histamines.
Histamines are released when the body detects that foreign matter has entered into it. The histamines signal the body to send blood to the affected area, which causes swelling and inflammation.
But for Miss Coates, the histamine response is triggered by her mast cells' abnormal response to getting hot and sweaty.
It continues unabated, causing her body tissues to swell up, her blood vessels to become constricted and the tubes in her lungs to become inflamed and constricted, causing her to have difficulty breathing.

 

[Griffin]

I'm wary of making any assumptions about cause. The different theories all seem anacdotal to me, although some are more commonly mentioned than others. The problem as I see it is that the true cause for someone's illness may have gone unnoticed at the time, or be muddled up with assumed cause. I guess these discussions will run and run until some hard science reveals cause,or causes.

 

[BurnA]

I'm wary of making any assumptions about cause. The different theories all seem anacdotal to me, although some are more commonly mentioned than others. The problem as I see it is that the true cause for someone's illness may have gone unnoticed at the time, or be muddled up with assumed cause. I guess these discussions will run and run until some hard science reveals cause,or causes.

Yes I agree. I have read what I consider crazy causes but others may be convinced by them.

I guess everyone will associate whatever happened the days or weeks prior to onset with their me / cfs.

In my case I had a sore throat, went cycling and felt awful the next day. This virus lasted about 2-3 weeks until it cleared. 3 days later after going to the gym I couldn't get out of bed and so it began....
So I associate exercise and viral infection with my onset but who knows what the main factor was.

 

[MeSci]

I wasn't doing formal exercise, but I was doing a lot of very strenuous activity when I became ill, or shortly before becoming ill.

Then, as my muscles started to let me down, I of course continued to push myself, trying to get fit...

 

[SOC]

If we're talking a single cause for ME/CFS, we are going to have to find something we are doing (or that happened to us) that people who remained healthy did not do. Millions of people worldwide are exercising at a high level and not getting ME. So exercise is not causal in and of itself. The same is true for infections like EBV. Millions of people get EBV, relatively few develop ME.

If we want to talk multiple hits -- like a genetic immune disorder plus a common infection, or exercising heavily while you have a serious infection, then any of possibly hundreds of combinations could trigger ME. We really have little information to help us sort out what combinations could be problematic. Even then, how many people who exercise while ill (most professional athletes, for example) get ME? Almost none. We need combinations that explain why we got ME and others didn't. Exercise doesn't fit very well as a causal factor.

IMO, any supposed behavioral triggers are more likely to be patient-blaming (even if the patients is blaming him/herself) than any medical reality. We (and others) want to find a reason we got hit with this thing and other people didn't, so we look at what we were doing at the time -- working a lot, exercising a lot, not eating a perfect diet. But correlation is not causation. We need to look at what's going on in our bodies, not what we were doing at the time we first noticed symptoms if we want to track down causal elements.

 

[BurnA]

If we're talking a single cause for ME/CFS, we are going to have to find something we are doing (or that happened to us) that people who remained healthy did not do. Millions of people worldwide are exercising at a high level and not getting ME. So exercise is not causal in and of itself. The same is true for infections like EBV. Millions of people get EBV, relatively few develop ME.

If we want to talk multiple hits -- like a genetic immune disorder plus a common infection, or exercising heavily while you have a serious infection, then any of possibly hundreds of combinations could trigger ME. We really have little information to help us sort out what combinations could be problematic. Even then, how many people who exercise while ill (most professional athletes, for example) get ME? Almost none. We need combinations that explain why we got ME and others didn't. Exercise doesn't fit very well as a causal factor.

IMO, any supposed behavioral triggers are more likely to be patient-blaming (even if the patients is blaming him/herself) than any medical reality. We (and others) want to find a reason we got hit with this thing and other people didn't, so we look at what we were doing at the time -- working a lot, exercising a lot, not eating a perfect diet. But correlation is not causation. We need to look at what's going on in our bodies, not what we were doing at the time we first noticed symptoms if we want to track down causal elements.

You talk a lot of sense.

Unfortunately all humans make associations but the logic doesn't always add up.
As you rightly point out there are many people exercising and no doubt with some form of infection ...if there was a strong link i think it would be recognised by now. There doesn't seem to be many people on this forum who associate exercise and virus together with me/cfs onset.

However there could be a link but there are so few ME /CFS consultants that the data isn't available. For example Dr. Chia is convinced there is a link between taking steroids with an infection - there is thread about it here. But is there scientific evidence - no. Similarly in Alastair Miller's video on the first page of this thread he associated exercise with a viral infection to ME /CFS. Again there is no evidence.

So, the bottom line is we don't know.
Many people blame diet, mold, amalgam fillings, stress etc however there are millions of people with poor diet, plenty of fillings and leading stressful lives so this doesn't make any sense to me.

Ultimately I suspect the real cause is a lot more subtle and may never be understood, perhaps it is mostly random. But it could be that the randomness needs an external factor such as stress or exercise on top of a virus all at the wrong moment ...all speculation.

 

[MeSci]

You talk a lot of sense.However there could be a link but there are so few ME /CFS consultants that the data isn't available. For example Dr. Chia is convinced there is a link between taking steroids with an infection - there is thread about it here. But is there scientific evidence - no. Similarly in Alastair Miller's video on the first page of this thread he associated exercise with a viral infection to ME /CFS. Again there is no evidence.

So, the bottom line is we don't know.
Many people blame diet, mold, amalgam fillings, stress etc however there are millions of people with poor diet, plenty of fillings and leading stressful lives so this doesn't make any sense to me.

Ultimately I suspect the real cause is a lot more subtle and may never be understood, perhaps it is mostly random. But it could be that the randomness needs an external factor such as stress or exercise on top of a virus all at the wrong moment ...all speculation.

Isn't Miller one of the BPS mob?

http://forums.phoenixrising.me/inde...ller-as-joint-medical-advisor-for-afme.40423/

 

[MeSci]

Or infection->antibody-> mild->exercise->severe.

Or the antibody could be to a type of immune cell, which would increase the risk of infection.

 

[MeSci]

I wasn't exercising any more than usual when I first got ill - mine had a sudden viral start. But it makes sense that if immune dysfunction of some kind is involved, that heavy exercise could make problems more likely. Same with stress, lack of sleep, or anything else that normally throws the immune system out of whack.

There have been a number of studies on the effects of exercise or stress in the presence of infections, and I think the results may have been mixed, but this article from 2009 says 'don't'.

 

[Marky90]

I got ill after some weeks of pushing it with cardio, but i had already felt off for a couple of months.

The likely scenario is that my ME was gradual, and got worse when i pushed my body beyond its capacity (PEM).

Exercise probably didnt trigger my ME, but it made it worse.

The original trigger(s) can be loads of things.. I dont think everybody has a viral trigger, mainly because many autoimmune illnesses has different ways into the disease.

 

[BurnA]

There have been a number of studies on the effects of exercise or stress in the presence of infections, and I think the results may have been mixed, but this article from 2009 says 'don't'.

Yes, but the main fear is that the infection could get worse etc. there is nothing to state that it could cause ME/CFS or any other disease.
It stands to reason that it might be harder to fight an infection if our bodies are stressed from exercise but why would that lead to ME / CFS ? That's the bit I don't follow.

 

[MeSci]

Perhaps ME develops due to an unusually strong immune response to an infection. Ironically, you may only be able to mount such a strong immune response if your immune system is relatively healthy to begin with. People who train and are in excellent physical condition may just be more likely to have strong immune systems, either because the training produces a stronger immune system or the people with strong immune systems are more likely train (because they are not otherwise in bad health). Anyway, if this were true, you might be somewhat more likely to get ME if your were in good health previously.

This is somewhat like the theory that younger people were more likely to die in the Great Influenza of 1918 because their healthy immune systems responded so strongly that the massive reaction actually contributed to their deaths.

Just speculation...

Sorry if this has already been dealt with (I am trying to catch up here) but do you have a link for this?

This page says that the epidemic was due to a loss of herd immunity. (But that doesn't seem right, as this flu strain was a new one so there won't have been any herd immunity to start with.)

 

[Chrisb]

There have been a number of studies on the effects of exercise or stress in the presence of infections, and I think the results may have been mixed, but this article from 2009 says 'don't'

I am sure this is good advice. But I don't think it tells the whole story. The problem with Ramsey's ME as I understand it is that the initial infection leads to a recovery in the form of a relapsing /remitting condition. Every time the remission comes around you think that this time you have recovered and start doing what you have always done -exercise. Every time the relapse comes you think, perhaps that wasn't wise.

I think that this aspect of ME, which does not seem to be present in some of the cases of CFS, has been largely ignored for the last twenty years as people have settled upon PEM as being the lowest common denominator. I only came to recognise PEM sometime later. The relapses would come anyway.It did not make any difference if I deliberately did very little, in an attempt to avoid the relapse, or tried to live a normal life. Clearly the attempt to force the issue with a little light mountaineering back-fired.